PT part 2

Balancing fibromyalgia and exercise is not easy. Slow and steady.

Physical therapy

I finally went to physical therapy. I avoid it because it will set off a flare. But my knee his needs taken care of. The physical therapist seems very nice, although has the typical 'what do I do with this one' look that my doctors get. *sigh*.

Dory: Just keep swimming, just keep swimming...

Epic flare

Or at least it feels epic. It's been over a month straight.

Ongoing Flare

A lengthy flare has lead to wondering if this is my new "normal". That is a scary thought.

I have been down for about 2 weeks. I've had to force myself to stay in bed when important things needed done, like grocery shopping. I usually do a large shopping trip at the beginning of the month to stock up on most of what we need in a month.

But those trips take a lot of spoons (https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/). Right now I barely have spoons for bare minimum of bathroom trips and eating. Luckily I have a habit of storing a little extra just in case.

If this is my new normal, it will mean having to run the doctor gauntlet again. That's where your General Practitioner sends you to every specialist they can think of to see if someone has some idea of how to help. It's mostly useless, but I keep hoping for a miracle.

Please comment below with any suggestions you have for coping with exceptionally long flares. I'd appreciate some ideas.

Pep talk

You are awesome. Remember that when you're having a bad day.

Give yourself a pro talk:
https://themighty.com/2017/09/chronic-illness-pep-talk/

Look up and share related memes:
https://www.pinterest.com/healingwell/chronic-illness/

Remember you are not alone:
http://www.chronically-awesome.com

Coming down...

Coming down off a flare can tempt a person to push themselves too hard. When I start to feel better I often think oh I can catch up on those chores I've neglected for days. But self care is as important now as it was at the peak of my flare. I have to continue to rest extra, take my pain relievers, watch what I eat, get extra sleep. I'd I push myself too soon I coukd make the flare last longer OR trigger a new one. I've had both happen.

Do I always manage to do the necessary self care? No. Someone has to make sure chores get done, errands get done, and bills get paid. I do my best because that's all I can do.

Flare

After weeks of feeling pretty good and doing stuff almost like an average person might, I crashed. 2 days of being in bed trying to keep my attention off the pain.

Pain does bad things to a person's state of mind. Although my partner is fully aware of my condition and epically supportive, I struggle to ask for the simple things I need (ie food) when he has worked all day.

My kid, who is also epically supportive, is current on vacation. Which brings me to the real point of this post...

How to care for myself when my caretakers are gone.

I'm really bad at this. I will either push too hard or do not nearly enough. This time was too little. I didn't get up unless I needed to use the bathroom. Then, if I could make it down the hallway, I would go to the kitchen and grab food. After 2 days of not eating nearly enough, my body is extra cranky with me. Now I'm still in a flare AND I'm having digestive issues from not eating. A person can only eat so many granola bars.

What I should have done was ask my partner to help me make sure I had the food and beverages I needed readily available. He would have done so had I asked.

Why didn't I? Pride, guilt, stubbornness, shame. After so many years of living with this condition I still get caught in the web of negative stereotypes. The doctor who called teenaged me a hypochondriac when I went to her about my fatigue and pain wasn't the only one who discounted my very real symptoms. It happened so much that I internalized them. I believed myself to be lazy, whiny, unmotivated, attention seeking.

Years of therapy and research about my condition has given me the ability to fight off those old feelings. Still, some days, the worst days, it's hard to remember I'm allowed to ask for help.

In the end, we can only do our best. I think I'll put a reminder by my bed that says I'm allowed to ask for help. Then, next flare, it'll be there waiting to remind me I don't need to suffer in silence.

Doing my best...

I live in an apartment complex. The owner has been trying to sell the property. When I asked, repeatedly, for the caulking around my tub to be fixed I got no response. So I did it myself.

Here's what I learned:
I can still do things.
I can still learn new skills outside my usual areas.
I should have bought more of the specialized caulking tools.
Doing my best is good enough.

Little things

Little things can mess up my whole day. This morning there were people working on the building I live in. Men were directly outside my window. Woke me up hours before I would usually wake up. Little things like this have a huge impact on people with chronic illnesses. That change in sleep will make me nonfunctional for the whole day, and possibly tomorrow too.

My building managers don't care. But yours might. Don't be afraid to ask them to adjust for your needs. A simple schedule change might keep workers away from your window early in the day.

Giving up...

Years ago I gave up trying to exercise regularly. I was always depressed, unmotivated, and scared I'd trigger a flare. I gave up in normal shoes, I only wear easy slip ons. I stopped wearing make up at all, not that I was ever a daily makeup person. I cut my hair short so I just wash, comb and I'm done. My clothing is almost all easy pull on, not buttons, nothing fancy.

Then, a couple years ago, I started making changes to attempt to increase my functioning and stop weight gain. It's been a slow process.

Last week, fir the durst time, I went with my partner to walk our dog. I came home exhausted and had blisters on my feet. It was great.

I've walked several more times since then. I have more blisters. And I decided I needed walking shoes. Now I'm looking at other things I gave up on...

Summer

Summer is my best time of year. Relief from seasonal depression and cold induced pain and lethargy make a huge difference in my functioning.

The results...

I am really ouchy today. But for once it's for a good reason. My legs are as sore as an average person would expect to be after taking an extra long walk above their fitness level. It hasn't seemed to trigger a flare. I was hoping to try to walk today but other things got in the way. I have hope I will walk tomorrow.

Walking with my partner was totally worth being sore today.

Cost benefits analysis...

I haven't walked farther than my back yard or short trips to a store in years. The pain or fatigue nearly crippling me. But today I felt up to going for a walk.
My partner (or son) walks our dog everyday. I have never done that walk with them. Not once in 4 years. It was such a beautiful day. Perfect weather. So, last minute decision, I put my shoes on and out the door I went.

My partner had to slow down considerably for me. I thought 'I'll walk this little loop, then I'll go back' . But I felt great, so I kept going. Next it was 'I'll go to that road' and 'I'll go to the corner'. I decided to sit even though I didn't "have to" when we got to a good place to rest. They continued their walk and circled back to me (no way I was walking 5k). After sitting I was refreshed. So the walk home together was easier than I'd thought possible.

Here's the catch... I made the decision to walk knowing there is the possibility it will trigger a flare that will make me nonfunctional for days. I don't even know yet. Tomorrow will tell. But I'm proud of myself for being able to move forward today and be able to decide a walk with my partner is worth that chance.

Every day is a battle

I've been working on an online research 'journal' to earn a little money. This research asked about mental and physical health and wellness. It was super depressing. They asked alot of questions that were hard to answer. As people with chronic illnesses, we tend to gloss over the details of our days. I will tell someone I am having a good or bad day, if they ask. Because I cannot change it, I stop myself from thinking about how my life would be if I wasn't sick, or if I had a ton of money or even if I just had better health insurance coverage. We cope by focusing on the good things. For example, I have been doing so well I haven't spent a full day in bed in 2 years. A few a days I was only up for a few hours, but I was up. So, I pushed through the uncomfortable journal entries, thwn turn my mind back to the good things in my life.

Focus on the Can's, not the Can't's.

Bad day.

Trying to write a blog post about bad pain days and accidentally deleting the whole thing.

Treatment

A doctor who said I 'might' have fibromyalgia told me that since I was on antidepressants and taking pain relievers daily already there was no other treatments available. I have days with pain so bad it brings tears to my eyes and the doctors keep telling me there's nothing they can do to help me. "Get more exercise" and "try yoga" is what I am told.

How do you exercise when you can't move?

Repetitive...

It never stops. There is no "get well". Chronic illnesses are chronic. Every day, all day. There's no cure. There's not much that can be done to help.

The best we can do is keep living the fullest life we can, one day at a time.

Things about my condition that annoy me

Medicare. Fucking. Sucks.

Things about my condition that annoy me...

My "good" day is nothing like what average people think of as good. My "good" is probably around the same level as an average, healthy person's "okay". My average day is more like a health person who worked out too hard, is coming down with the flu, didn't sleep well last night, and their pet just died.

Things about my condition that annoy me...

Abandonment issues... They never, ever go all the way away. Been with the same wonderful partner for over 10 years. Still have to fight down the "he's going to leave me" thought spiral several times month.

Things about my condition that annoy me...

Sometimes I say and do crazy things... And always regret it.

Things about my condition that annoy me...

Not being able to "be there" for my kid. I've missed school activities, teacher conferences, concerts, competitions, meetings, ceremonies. He missed out on so many things because to go to them he needed a ride, and I couldn't do it. I've missed far more than I've managed to attend. He takes it well. Pats me on the shoulder and says "it's ok, Mom, you're sick." But sometimes he can't hide the disappointment.

I do my best, but I still have sadness and guilt for all the parts of being a mom to him that I missed.

Things about my condition that annoy me...

My partner has to be a care giver. He doesn't mind, but I feel like it's not fair.

Things about my condition that annoy me...

Being fine, having a good day, then, suddenly being so tired you need to nap.

Things about my condition that annoy me...

It's hard to be a good friend when you can't get out of bed.

Things about my condition that annoy me...

Around January I become useless.